Discussion Forums > Thalassemia Major

Checklist for thal majors?

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BabyI:
Wanted to update:

I took my daughter to thal excellence center with Dr. Giardina in NY. She was very nice and explained everything. She said nowadays they don't just look at the hemeglobin level to determine when to transfuse.  She said they will look at health of baby as well. If my baby is growing and her hemaglobin is 7 then they won't transfuse. Only if she isn't growing or there are changes to face or she isn't eating well then they transfuse. She said just looking at hemaglobin level is outdated. Do you all agree?

Also she is going to do DNA test to determine what exactly my daughter has.
My daughter is often fussy and sometimes not eating well but I don't know if its just normal behavior or something serious. I worry I may miss something.

Thanks

Pratik:

--- Quote from: BabyI on November 28, 2012, 06:28:11 PM ---Wanted to update:

I took my daughter to thal excellence center with Dr. Giardina in NY. She was very nice and explained everything. She said nowadays they don't just look at the hemeglobin level to determine when to transfuse.  She said they will look at health of baby as well. If my baby is growing and her hemaglobin is 7 then they won't transfuse. Only if she isn't growing or there are changes to face or she isn't eating well then they transfuse. She said just looking at hemaglobin level is outdated. Do you all agree?

Also she is going to do DNA test to determine what exactly my daughter has.
My daughter is often fussy and sometimes not eating well but I don't know if its just normal behavior or something serious. I worry I may miss something.

Thanks

--- End quote ---
Hb is most important.

Low levels usually causes fatigue or "mood swings". Hence many thal majors 2-3 days before the transfusion are tend to have mood swings or feeling restlessness due to lack of Hb.

Although I'm not a doctor, Andy's advise maybe more beneficial.

-P.

BabyI:
Our last checkup it was 7.9 and they said it was fine...

Andy Battaglia:
A hemoglobin level of 7 is the traditional point where chronic transfusions begin. Many doctors will transfuse the child before then, regardless of their growth and development, but some doctors weigh each case on its own merits, as Dr Giardina is doing here, and in order to delay the advent of chelation, they will also delay transfusing as long as the baby is doing well without taking blood. One of the values of the Centers of Excellence is that each patient is treated as an individual and the treatment program is designed for that patient.

BabyI:
Went today. Hemeglobin was 8.2. Found that strange but doctor said that it goes up or down some because its bit 100% accurate. Baby is growing so that's good.

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